Community Care Access Centres (CCAC)

Again, this is a very Ontario-centric posting!

I can't overestimate how important the Community Care Access Centers have been for us. They're a network of offices throughout Ontario, funded and legislated by the Ontario Ministry of Health and Long-Term Care. You need a CCAC assessment to qualify someone for residence in a long-term care facility, so that's an obviously important function. But there's a lot more to them.

CCACs provide regional information portals that can help with so many challenges faced by the elderly and their families: challenges that we don't always plan for, and sometimes overlook. Because they aim to maximize the time the elderly spend in their own homes, CCAC centers can coordinate with regional nursing and home care services to provide:

• personal support, for help with things like bathing and dressing;
• nursing care;
• physiotherapy;
• speech language therapy;
• medical equipment and supplies.

They also coordinate special services like:

• respite care: a short-term residence in a nursing home to give a caregiver a break;
• convalescent care: a short-term residence in a nursing home to recover from a specific illness or operation;
• mental health services;
• palliative care.

If you're worried about a parent who doesn't seem to be coping as well at home, but is reluctant to go into a long-term care facility, CCAC just might be able to provide you with what you need to help your parent to stay in his or her home. Call your local office and arrange for an assessment; the health professional will arrange for an interview and assessment, and also assess anything that needs to be done to the home (handrails, electric staircase, etc.). They also serve residents of retirement communities as well, so if your loved one is in a retirement home, but facing a long waiting list for long-term care, CCAC could provide an excellent bridge.

When our parents began to fail, we had enormous trouble sorting out all the problems, all the medications, all the different doctors, and all our own mixed feelings. The CCAC assessment was a very important first step towards gaining objectivity, and figuring out how these problems could be solved.

Book: Successful Communication with Persons with Alzheimer's Disease

Pietro, Mary Jo Santo, and Elizabeth Ostuni. Successful Communication with Persons with Alzheimer's Disease: An In-Service Manual. 2nd ed. St. Louis: Butterworth Heinemann, 2003.

This book is designed as a training session, complete with checklists, self-study questionnaires and checklists, and has clearly been used to train care workers in institutions. But its use extends beyond that limited purpose: it provides a wealth of useful advice and guidance to anyone who's involved in the care of someone with Alzheimer's.

I found it particularly useful at the early stages for planning, because it gives a very useful overview of the patterns of deterioration in the communication skills of Alzheimer's patients: what skills are preserved in the early stages, and the middle and the late stages.

The poem that opens the book is so moving that it had me in tears for about an hour: don't read it in the bookstore!

Purchase from Chapters
Purchase from Amazon

Grant

GentleCare Philosophy

Many thanks to Jo Ann, who alerted me to the GentleCare philosophy of dementia care: I'd heard about it, but forgotten about it entirely.

Here's a link to the Toronto Homes for the Aged brochure, giving information on the gentlecare philosophy: an approach that aims to respect the individuality of each resident in an advanced care Alzheimer's facility. It might be worth inquiring, when scouting out a long-term care facility, whether or not the facility adheres to the GentleCare philosophy. Many residences post this on their websites.

http://www.toronto.ca/homesfortheaged/pdf/gentlecare_bro.pdf

Grant

Music and Alzheimer's

Every week, I play my violin with my mother on her portable electric keyboard: we go down to the floor where the advanced cases of Alzheimer's live, and we play songs for them.

When people hear about that, they're practically ready to canonize me as a saint: what a wonderful thing you're doing! they whisper, with the underlying subtext being: I could never do that myself. It's too depressing.

The big surprise: it isn't. It's actually a lot of fun. You've got to be ready to make a bit of a fool of yourself, and you've got to be prepared to roll with the punches. Sometimes, someone gets cranky and snaps at someone else, and other times people are just too scattered to sit. But most of the time, we have real fun, and I find it invigorating. Some of them recognize the melodies, and find themselves singing along, the right words coming out without them realizing it. Others like the beat, and tap along. Still others like the music itself: they close their eyes and wave their hands, listening to the rise and fall of a phrase.

We do it for half an hour, and there's no doubt about it: the best songs are the old ones. "It's a long way to Tipperary" is a favourite, and can always be relied upon to get people tapping and singing and clapping. "Edelweiss" from The Sound of Music, "On the Street Where You Live," from My Fair Lady, and "Oh, what a beautiful mornin'" from Okalhoma! are other big favourites. "Somewhere Over the Rainbow," "Always," "Daisy, Daisy," and "School Days" also go over well.

Time and again, I've dragged myself to the residence to play, thinking to myself, no, I don't want to do this. I'm too tired, I'm too busy. And by the time I leave, there's a spring in my step, and I'm humming to myself, feeling pretty good about the world and about people. It's nice to think that people with Alzheimer's Disease, people who live such lonely and constricted lives, can actually do a person good. But they do me good. At least for half an hour per week!

Grant

Long-Term Care Facility vs. Retirement Community

First of all, apologies to anyone not living in Ontario.

In Ontario, we have retirement communities: these are for people who no longer wish to live alone, but who still retain some measure of independence. And while many of them offer graduated levels of care, ranging from virtual independence to advanced care, they are NOT considered long-term care facilities. Retirement homes are not administered by the Ontario Government; instead, they are accredited by the Ontario Retirement Communities Association (ORCA).

Long-term care facilities are for people who need substantial assistance in daily living. They are regulated by the Ontario Ministry of Health and Long-Term Care, and although they may be owned by private or charitable organizations, they have to meet the Ministry standards for facilities and care.

Why is this important?

• The waiting list for long-term care facilities is often very long, while the waiting list for admission into a retirement home with graduated care is not necessarily long at all;
• People only qualify for long-term care AFTER they have been fully assessed by their local Community Care Access Center (CCAC) ; you do NOT need a CCAC assessment for admission to a retirement community;
• While the care received on the Advanced Care floor of an ORCA-accredited retirement home may be as complete as that in a long-term care facility, it is NOT regulated by the Ontario ministry. The care requirements for ORCA-accredited care can be found in the ORCA accreditation document, on pages 17-20;
• When your parents are placed on the waiting list, they have to declare 3 choices; when one becomes available, they MUST move into it, or else be removed from the waiting list for 6 months. If it's not their first choice, they can move into the first choice later, as soon as a place becomes available.

This can be really, really confusing. It means that if your parents are in a retirement home and need extra care, they can arrange that care through CCAC, just as they would if they were living at home. OR, they can choose to go up to a higher level of care within the retirement home. But that decision would NOT be based on a CCAC assessment.

Confusing, isn't it? And at times like these, the last thing we're ready for is more confusion!